More healthy but more "sick"

Hello all! I’m new here and I’m starting gout with a rant. I was diagnosed type 1 back in 1989 at 11 months old. The endocrinologist I had until the age of 17 or so was old school. He didn’t believe in insulin pumps and thought I needed to keep my A1C between 8 and 9 since I was young. After that I went off to college and started living my adult life. I had been a very lazy diabetic. I guessed on my carb counts, didn’t check my blood sugar often and generally ignored my disease. I now have neuropathy affecting my hands and non-proliferative diabetic retinopathy causing blind spots in my right eye.

This year, I’ve decided that I need to take care of myself. I’ve gotten an insulin pump, a cgm, and an endocrinologist that I love. My last A1C was 6.6%, a number I’ve never seen so low! I’m very proud of myself, but, it seems that the healthier I am and the more I take care of myself, the sicker I feel mentally. I had forgotten what it felt like not to feel burning pain in my hands but now I take pills three times a day to relieve it. I’m literally attached to medical devices 24 hours a day. I use a food scale and a tape measure now to get accurate carb counts. Going out to eat is a nightmare and I have gotten very offensive responses by asking for carb counts at restaurants. I wouldn’t trade in my good control for anything, but I truly feel that I have disease now and I’m getting depressed because of it. I feel alone because it’s hard for others in my life to see the mental impact of all this.

I don’t know, I guess I’m just ranting, but I need to rant to people who understand. Thanks for listening (reading? whatever).

2 Likes

Welcome to Tudiabetes! I’m sorry that you feel alone IRL but that’s a feeling many of us shared until we connected online. I was Dx’ed 1984 and met maybe 1/2 dozen other PWD until 2008,when I started hanging around online as I was looking for info about pumps. I’d been playing fantasy baseball for a few years at that time and always found message boards to be useful and figured “I wonder if there are diabetes message boards?” which has transmogrified into all sorts of adventures and kibbitzing online, a few IRL meetups in various spots, an interesting trip to after-hours cocktail parties at the ADA Scientific Sessions in Chicago and a fun trip to the Diabetes Unconference*.

You should feel a great sense of accomplishment in the A1C progress you’ve made! That is a big step in the right direction and I applaud you for taking those steps to get where you are! Welcome again to the site and the community.

*= http://diabetesunconference.com/, I highly recommend this if you think a few days of IRL D-conversations and connections might be enlightening…plus it’s in Vegas…heh heh heh. @Elena2 went last year as a relatively newly Dx’ed person and I got the sense that she enjoyed meeting folks. I think she may have been one of the newer dx’ed people but there were a wide range of experiences and feelings shared by most of the participants and, most importantly, many of us had similar experiences in having challenges, feeling like we needed to get it together and having challenges. Many of us have stayed connected through FB and I think quite a few folks are going next year, with the Unconference expanding to Atlantic City for a more convenient East Coast option…Sorry for the sales pitch but quite a few of the Tu/ DHF folks figured prominently in the proceedings so I think it should be ok?

1 Like

miss margie,
congratulations on your a1c and moves to improve on diabetes care. im sorry youve got complications with your eyes and nerves, though glad to hear you are able to get some relief with medication.

i was only diagnosed as an adult and so i cant imagine what it was like to share my childhood with diabetes. i do understand you though when you say you really feel like you are sick now that youre paying attention to it. taking care of diabetes is a lot of work that other people see and dont see at the same time. keep doing everything youre doing and come back to tuD whenever you need to rant or have questions or discover something new that works for you that might help us all out here!

sending you good D vibes,
m

Congrats on your new improved control. I was trained up on the old “exchange system” when I was diagnosed in 1977, but decided to go back to basics and re-learn carb-counting about 10 years ago. I also went back to using scales to get accurate counts. My experience (and I think you may find the same), is that after a year or so, your “eye” gets “in” and you acquire the ability to “guestimate” carb counts quite accurately. At this point you should be able to dispense with the scales, which will make eating out easier.

Are you using a CGM with your pump? I find this an essential tool as you can see your BG trend. The individual points you get from even frequent fingersticks are much less informative. I would describe my approach now as sort of “closed loop” only with me acting as the processor. I don’t stress about super-accurate carb counts but watch the trend and adjust my basal or bolus doses on-the-fly to try to stave off hypos or hypers before they happen.

Good luck!

Joel

1 Like

I was wondering if that was what you were getting at when I saw the title in the forum list. I had a similar experience when I went from basal/bolus injections (MDI) to a pump. On MDI I didn’t really have the same hour-by-hour (sometimes minute-by-minute) awareness of it, but now I had this thing attached to me that was ticking along, needing adjustments, sending out alarms and otherwise acting like a small mechanical embodiment of my disease yelling diabetic! diabetic! diabetic! at me all the time, and that part of it was kind of a shock. “I don’t know if I want to think about this stuff that much!” was my reaction too. I came up with my own mental term for it: Diabetic Claustrophobia. FWIW I think we all experience some version of it.

I do think that specific part of it gets easier over time. It sounds like you’re really bearing down on it, but you do get a pretty good sense of how much you need for the things you eat most often and you can judge similar foods/amounts accordingly. Restaurants are always difficult (and parties with lots of finger-food–the worst!) but one of the good things about the pump is you can adjust more easily when you don’t get the calculations exactly right–and nobody gets the calculations exactly right all the time.

Well except for Ace T1’s like @acidrock23 here, but in the face of such superhuman powers of endocrinological mastery we ordinary mortals can only stand in awe and admiration, right acidrock? ;-0

I dunno about admiration, I take it one test at a time. Ok, sometimes, I’m testing now with an eye on the future too…not so much the past @DrBB!

1 Like

I have to say, I am a total pain in the restaurant. I really don’t care whether the restaurant takes offense at my questions or ordering. I routinely ask for things to be prepared different, to skip the sauce. I will look through the menu and ask for sides to be exchanged. I don’t want the mashed potatoes, I want the spinach. I am the customer. In fact I am not just the customer, I have “&*$%%$” diabetes and I have every right to ask for reasonable accommodations when I eat out. Feeling empowered is so much better than feeling enslaved. I hope you can feel that way too.

ps. If you come to the next unconference I’ll sit with you at dinner and we can both grill the waiter and then ask for asparagus instead of french fries.

I,ve had t1D since 1936 when I was not yet 3
Food was weighed & measured…the old school…etc…
Now have pump & love it
Welcome to tudiabetes

Good on ya for putting yourself in the driver’s seat of your health! :smiley:

Do you feel anger with your childhood diabetes care? I would, but let it run its natural course and don’t allow it to fester. In 2012, after 28 years of living with diabetes, I discovered the magic of a low carb way of eating and finally bringing some sanity to my blood glucose control.

At that point I was diagnosed with a diabetes complication that made me really sit up and take notice. I was angry that the entire diabetes medical establishment I was exposed to over 28 years (several endocrinologists, diabetes nurses, certified diabetes educators, a few dietitians, the ADA, and the JDRF) willfully hid the value of low carb eating.

To be fair, the information was out there with Dr. Bernstein and a few people on this site, but it never broke through to me. Faced with a significant diabetes complication diagnosis, I started actively following the low carb debate and then gave it a try. It made a huge difference to me and I learned that the real experts in dealing with diabetes are those that live with it all day, every day! As I watch diabetes professionals and their various organizations continue to obfuscate the truth that many of us live, I hold little patience with their behavior.

I take comfort in the fact that many diabetes complications can be reversed or at least slowed down if you can restore more normal blood sugars. Dr. Bernstein reports the reversal of a few diabetes complications that he experienced. It took him about 25-30 years to establish normal blood sugar. He’s had diabetes for about 70 years now. What I’m trying to say is that it’s never too late to make a change and restore a healthier you.

Site members here are big on empathy and that is golden in terms of your emotional and psychological health. Some of us are big on tactics, a smaller portion of the TuD population. For me, tactics that can produce normal blood sugar levels are the very things that brighten my mental and emotional health. Solace and empathy are certainly needed and often in short supply but kicking diabetes’ a$$ and laying down a tight multi-hour line of BGs is what truly excites me!

Congrats on your better numbers. You can make your health better!

1 Like

Yay for you! Your hard work is paying off! I love this site and have learned so much from the people on here. I am so grateful to those who post what they know and especially those who take the time to answer my novice questions. Your feelings about D is not different than most folks who live with D. It is HARD work to have great control. I have not arrived there yet but I WILL. You are worthy of the title,
“Strong!”

I meant to put this thought out there…I keep a TINY book in my purse for eating out. I figure out a meal with the carbs and such on a page in the book. If it works out well, then I know what to eat next time without doing all the math and decision making, Another time I might venture another meal and add to my collection. If at all possible I try to figure out what I am eating ahead of time so I can really enjoy the people I am with.

You know, I do feel angry sometimes. Especially when my blind spots are incredibly obvious to me or when my hands are hurting really bad. It’s hard not to think about the fact that if I had had a better doctor then I would be in better control now. Then I get angry because my parents wouldn’t drive me further to the city to take me to another doctor (I grew up in the country and had few choices). But, after I let myself get angry I play the “what-if” game. You know, what if my mother drove me the extra 20 minutes to a better doctor and we got into a car crash, or what-if I ended up with a worse doctor, or what if I had had a great doctor and still ended up with complications. I just have to remind myself that what-ifs go both ways.

A while ago I started eating high fat and have more mental clarity, better sleep, more energy, higher libido. So, I recently started with the low carb and my blood sugars have been wonderful since doing that. They are much more predictable and barely spike, it’s amazing. More people need to know about this. An interesting and entertaining documentary watch (if you haven’t) is Fat Head, is kind of a response to Super Size Me.

Glad to read about your success with low carb high fat way of eating. It’s made an enormous contribution to my current health.

Yeah, the past is gone and we can’t get it back. What we do have is now and we must make that count. I enjoyed seeing Fat Head. I think we, as a society, made some poor conclusions about fat in our diet. I think people will look back on this period in history and wonder how we got it so wrong. Processed carbs are the real culprit!